Waiting Room Etiquette from the Disability Perspective

I’m trying to get Spinraza, the first-ever treatment for SMA. (If that occurs, this blog will probably share further details.) Anyway, for the neurologist to submit the treatment request to my insurance company, I had to get examined by a physical therapist. I was in the waiting room for about 15 minutes, and was driven absolutely nuts by a man on the far side of the waiting room who was video chatting with, first, his grandchildren and, second, his wife. Most socially-conscious people know that this kind of behavior is obnoxious. Then I got to thinking about waiting room and lobby etiquette from a disability prospective. This post summarizes my thoughts on the subject.

For owners and designers of waiting rooms and lobbies:

  • Do not line all of the walls with chairs; leave sufficient space for wheelchairs to park in the row with everyone else who is seated. I hate going into a waiting room and seeing every single space against the wall lined with chairs. Sometimes the chairs are even strategically spaced (i.e., extra-wide chairs perfectly interspersed with standard-sized chairs) so that no portion of the wall is left uncovered. Where is a wheelchair user to sit? In the middle of the room? No! They will sit in front of the chairs, parallel parked, and wind up blocking access to three standard-sized chairs. That’s awkward; give them better access.
  • Have a variety of seating options. In addition to offering standard-sized chairs, why not purchase a range of seating options? When I am at the doctor’s office, I regularly see people making use of the extra-wide and, even more so, extra-tall chairs. These can be used by people with broken bones, so as not to put extra pressure on the site of injury. The extra-tall chairs don’t require as much leg and hip flexion, helping patients with broken legs, as well as elderly people who have a difficult time sitting up from a lower chair.
  • Put items for guests at an accessible height or have staff automatically offer to assist guests in retrieving items. It frustrates me when a waiting room offers magazines, but places them on a low coffee table. Similarly, one of my doctor’s offices has a coffee machine and cookies on a low table. Fortunately, staff at the latter inquire as to my interest in the goodies, presenting an opportunity for me to easily ask for assistance. Similarly, if a guest is blind or visually impaired, staff should be instructed to inform him or her of items available while waiting.

For staff serving waiting room and lobby guests:

  • Understand that your clipboard may be insufficient to meet everyone’s needs. Because there aren’t any tables I can access in waiting rooms, I can’t independently fill out paperwork. When I ask for assistance, staff quickly hand me a clipboard. When I explain this accommodation is insufficient, that I actually need someone to physically write my answers, I’ve gotten eye roles. Inappropriate! I understand that you may be extremely busy meeting the needs of other patients, but you could kindly ask that I wait a few minutes. You could ask other personnel to provide assistance. Your office could have mailed me the paperwork before I came for my appointment. But, it’s on you to figure it out, as such assistance is a reasonable accommodation under the Americans with Disabilities Act.
  • Move chairs if it looks like someone in a wheelchair is struggling or uncomfortable. I remember interviewing for some jobs at State agencies with really tiny lobbies. I would be the only person waiting, and there would be five or six chairs crammed inside. Once there wasn’t enough room for me to even sit in the lobby, and the secretary told me she would call for me while I waited outside. Awkward… And what a great way to build my confidence going into a job interview! On another interview, the secretary sheepishly remarked on how there really wasn’t room for wheelchairs in the waiting room, but never offered to remove a couple of chairs so I didn’t have to sit in a manner that blocked the access route for anyone going in or out of the office.
  • Don’t assume guests or patients are being jerks. I was waiting for an administrative hearing with a colleague, and the secretary began to bark at my colleague for not filling out the guest log on her desk. My colleague is blind; she didn’t even know the log existed! I didn’t know it existed, either, because the desktop was higher than my head. If you have expectations of guests, explain them politely when they enter the office.
  • Don’t violate HIPAA because someone needs an accommodation. Sometimes a guest or patient will need paperwork read aloud. This could be due to blindness, and intellectual disability, etc. If reading assistance is requested, don’t read their medical information aloud to a filled waiting room. Invite the patient into a private area and complete their request.

For people with disabilities using lobbies and waiting rooms:

  • Don’t take up more space than you need to use. It drives me nuts when I see a fellow wheelchair user sitting parallel to a row of chairs, taking up three seats when there is room to sit elsewhere. Just because you a wheelchair doesn’t mean you can do whatever you want.
  • Don’t try to cut the line because you are disabled. Again, sometimes people with disabilities feel entitled to be accommodated to however they wish. Many times I’ve witnessed people with disabilities and their attendants cutting in front of others in a waiting room line. Everyone has an appointment for a reason, and yours is not more important merely because you have a visible disability. Take your place in the line like everyone else.

For fellow waiting room and lobby guests:

  • Pay attention to the seating arrangement before plopping down. Often, the best place for someone in a wheelchair to sit is at the end of a row of chairs. His or her attendant will sit in the chair next to them. However, the end-of-row seats seem to be the most frequently occupied by non-disabled people. When all of these end-of-row seats are taken, the wheelchair user may have nowhere to sit in a busy waiting room.
  • Don’t sit by me. Many people in wheelchairs are immunocompromised, and cannot keep their body healthy by doing regular exercise. If you are in the office to be treated for a contagious illness, please stay away!

Review: Far from the Tree

Before reading Andrew Solomon‘s Far from the Tree, I had read one of his prior books, The Noonday Demon. While I enjoyed the latter, a long work about depression, Far from the Tree was, frankly, beyond disappointing. As a person with a severe physical disability, I found it insulting.

As the title suggests, in Far from the Tree Solomon explores the relationship between children and parents when those children have a horizontal identity. In other words, Solomon looks at families in which a child has a disability or some other identity which its parents do not share. Specifically, Solomon looks at parents affected by deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, prodigy, rape, and crime. He lauds himself for interviewing “more than three hundred families for [the] book, some briefly and some in depth, producing nearly forty thousand pages of interview transcripts.”

Interestingly – and frustratingly – Solomon appears much more interested in speaking with parents than with the children, themselves. This is especially clear when it comes to disabled subjects. Despite his attempts to appear neutral and present multiple perspectives, Solomon’s true feelings of disdain are apparent:

Disability activists often referred to Ashley’s loss of dignity, but having seen a number of similarly disabled people lifted up in pulleys with chains to be removed from bed, put in metal standers to preserve muscle tone, conveyed on rope systems into showers, I cannot see much dignity there. (Solomon at 389.)

This statement produced a visceral reaction from this reader. First, for those who don’t know about Ashley, do a quick Google search on “the Ashley treatment” and “the pillow angel.” Ashley’s parents were worried they would not be able to care for her if she grew into an adult, and asked physicians to perform a total hysterectomy on her, remove her breast buds, and provide hormonal therapy to keep her small. This kind of rights violation would be absolutely unthinkable if Ashley was not disabled.

That Solomon thinks the mutilation of a child preserves dignity while use a Hoyer lift does not is inconceivable. Perhaps that’s because I use a lift myself when toileting and showering. I’m a lawyer. I’m a taxpayer. I’m a friend. I consider myself pretty darn dignified.

Don’t read this book. Find something more interesting. Something that actually considers the disability perspective.

2017 Conference on Disability

Earlier this week, I attended the 2017 Conference on Disability, sponsored by the Indiana Governor’s Council on People with Disabilities. (Disclaimer: I am a board member.) It was a great time, as usual.

The Sunday before the Conference began, the Indiana Statewide Independent Living Council (INSILC) conducted a town hall meeting. A moderator was brought in to  explain to Hoosiers the basics of centers for independent living, and then hear from the crowd how the centers and INSILC can better serve their constituencies. Common comment themes included frustration that the centers have not engaged more fully in public policy, concern that not many people know about the services offered by their local center, and hope that all of Indiana’s 92 counties may one day be served by a center. INSILC staff listened intently throughout the forum, and were thoughtful in assuring that those who were interested could participate in the event. My only objection is that participants were expected to raise their hand if they wished to make a comment – a task that’s not easy when your muscles don’t work. Nevertheless, it is evident that INSILC has vastly improved from previous years and I look forward to seeing how forum comments are used to further promote the organization and its independent living mission.

Monday’s breakfast keynote speaker was Senator Tom Harkin. The beginning of his speech focused on anecdotes about his Deaf brother and an entrepreneur with intellectual disabilities from Independence, Iowa. In essence, he was preaching to the choir about the ingenuity and dedication that people with disabilities bring to the business sector. Harkin shared that while many Titles of the Americans with Disabilities Act (ADA) have dramatically increased opportunities for people with disabilities, Title I, which addresses employment, has not had the same effect. Employment for people with disabilities is about the same as it was in 1990, the year the ADA was passed. in his retirement, Harkin has decided to work on this issue and recently held the second Harkin Summit on Global Disability Employment. I’m very interested in what he learned at the Summit, but this was not discussed.

Next up was my workshop, Changing the Agency Paradigm: Promoting Choice Through Consumer-Directed Care. I wasn’t expecting a large turnout; not many people in Indiana have taken advantage of the paltry consumer-directed options currently available. However, my room was packed! Attendees were very receptive to my message, and seemed eager to work on advocating for more consumer-directed options. As one attendee pointed out, though, providers need to be part of this conversation rather than sticking their heads in the sand or actively objecting to policy changes. Those providers were nowhere to be found. The session, and the interest of its participants, really got me revved up and excited to continue advocating for the expansion of consumer-directed care options through Indiana Medicaid.

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 Emily Munson presents a PowerPoint presentation from behind a podium with the assistance of Shannon Clark. Photo credit: Shannon Clark.

An independent living panel, consisting of people with a wide variety of disabilities, convened after lunch. Afterward, I attended a workshop by Diana Braun. She showed the film Body & Soul: Diana & Kathy, and then discussed what she has been doing since Kathy’s death. Then I spoke with some of the exhibitors, including the folks at the INDATA Project. The assistive technology available today is truly incredible, including a vibrating GPS system you can put inside your shoes and glasses that can help colorblind people better differentiate color.

Tuesday morning began with a keynote from Dr. Sue Gant. She spoke about what happened at Henry’s Turkey Farm, detailing horror after horror. I went to her workshop about detecting abuse and neglect afterward, although participants hijacked the session by asking specific questions before Dr. Gant even had the opportunity to begin. Disturbingly, one professional in the audience didn’t realize she was a mandatory reporter, nor did she have any idea to whom she is obligated to report abuse, neglect, and exploitation.

Lydia X. Z. Brown brought the energy to their afternoon keynote, Claiming Disability in Resistance: Exploring Disability Justice, Struggle, and Healing. After their speech, I got to purchase a copy of All the Weight of Our Dreams: On Living Radicalized Autism. While they were signing my book, I also got to ask Lydia about her experiences at Georgetown.

My final sessions of the day contemplated community organizing as an advocacy tool and website access. I also got to visit the AbleGamers and play a video game with only my eyes! It was amazing!

Free Our People Film Festival

I got home slightly before midnight, went to work in this morning, and saw the doctor this afternoon. So, you can expect me to be pretty tired. Nonetheless, I have to share how much fun it was participating in the Center for Disability RightsFree Our People Film Festival in Rochester, New York on Tuesday!

In March, my sister, Ginny, and I wrote and produced a seven-minute film, (Crip)perelli Life 2: Home Is Where The Hat Is. The film is a sequel to (Crip)perelli Life, a story about a highschooler with spinal muscular atrophy that joins a Mafia family with similarly disabled people. In the sequel, the highschooler’s service dog racing ring gets busted by the cops, and, without a transition plan in place, he gets stuck living in a nursing home. Members of the Cripperelli family have to bust him out.

Although the movie is satirical, it tackles the important and oft-ignored subject of institutionalization.  In fact, it’s estimated that more than 200,000 non-elderly people currently reside in nursing homes. The Center for Disability Rights sought to bring attention to this topic by sponsoring the Film Festival. Ginny and I came in second place, and had the pleasure of attending the Film Festival in person.

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Ginny introducing our production

In addition to watching the winning and third-place videos, the Center for Disability Rights showed a couple of other videos highlighting the terrible consequences of institutionalization. A filmmaker panel concluded the evening, as members of the audience got to ask questions about the films and other disability advocacy projects.

I was privileged to participate in the Film Festival, and encourage anyone reading this blog to check out each of the short films. You will laugh and definitely learn something.  Center for Disability Rights CEO Bruce Darling also committed to promoting a similar Film Festival next year, so keep visiting the website throughout the year if you want more information on how you can participate!

Banishing Bumpiness

Are you a wheelchair user? Do you experience back or neck pain? If so, you’re not alone. Today I listened to a Great Lakes ADA Center webinar on Surface Roughness and Rollability. I was surprised to learn that wheelchair users are twice as likely as the general population to suffer back and neck pain. In fact, 60% of wheelchair users report such soreness. Some of this discomfort may be attributed to vibrations caused by rolling over uneven pathways.

Uneven pathways are bad all around. Presenter Jon Pearlman shared that $30 billion is annually spent on medical costs associated with falls. The elderly population is especially susceptible to tripping. Falls also are the most common cause of traumatic brain injuries. If wheelchairs – and especially scooters – go over particularly uneven pathways, people sitting in them may fall out. Bad, bad, bad!

Dr. Pearlman and his team discovered that, regardless of the wheelchair brand/model, vibrations measured in wheelchair seats that are driven over pathways fall either within or above the vibration caution zone delineated by OSHA. So how do we minimize this danger?

Unfortunately, DME companies have not worked to resolve the problem. Studies reveal that wheelchair cushions actually amplify vibrations into the spinal column of the wheelchair user. Suspension systems are not sufficient, either. However, to create an adequate suspension system for the level of vibration typically experienced by a wheelchair user, the wheelchair would likely become unwieldy.

The solution, then, appears to lie in the proper design of pathways themselves. Surprisingly, Dr. Pearlman reports that some paving stones create smoother pathways than poured concrete. The pattern and bevel of the paver stones are determinative of the vibrations wheelchair users will experience. Municipalities, which are typically responsible for creating pedestrian paths, should take heed of Dr. Pearlman’s data when planning new projects.

Interestingly, the US Access Board funded a portion of Dr. Pearlman’s research. My hope, as a cobblestone-hating wheelchair user, is that the Access Board will develop standards requiring minimum smoothness.

Access and Inclusion Awards

Last Tuesday, I attended the annual Mayor’s Advisory Council on Disability‘s Access and Inclusion Awards. (As for this post, better late than never, right?) This ceremony did not occur last year because the Mayor’s Office was considering merging these awards with other diversity award ceremonies. But, thanks to relentless advocacy from Councilmember Paula Haskin, Mayor Hogsett agreed to a 2017 program.

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The ceremony began with a few words from the Mayor. His speech was geared toward empowerment and appreciation for the 27 years of continuing advocacy people with disabilities have made. His referring to a person in a wheelchair as “wheelchair-bound” was a minor blunder. For those who are unaware, “wheelchair-bound” is a disfavored phrase by many who use wheelchairs. We see wheelchairs not as something we are stuck in, but rather as tools of freedom. It was a teachable moment.

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Awards were received by the following individuals:

  • Scott Wise, owner of Scotty’s Brewhouse, won the award for being an employer offering opportunities to people with disabilities.
  • Indy Pride won for being a community organization going above and beyond to include individuals with disabilities in its programming.
  • Wade Wingler, of Easter Seals Crossroads, won the lifetime achievement award in honor of a life of service to individuals with disabilities.

Disability Rights March

Today I attended a disability rights March in Indianapolis sponsored by the Global Accessibility Project. Those who turned out – on a hot day that threatened thunderstorms – both with and without disabilities, are committed to promoting disability rights. A guy from Iowa even stopped by and joined us for a while, sharing that he stood in solidarity with our frustrations about the lack of inclusion of people with disabilities in the broader social justice landscape.

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Photo credit: Global Accessibility Project

As we marched around Indiana’s Statehouse and Government Center, numerous accessibility fails were witnessed:

  • Our permit was for gathering on the south lawn of the Statehouse. It’s impossible to get there without climbing stairs.
  • To enter the Statehouse, those who cannot climb stairs are required to enter in the back, via the basement.
  • Accessible parking is nowhere near the accessible entrances of either building.
  • Flower planters are placed about one foot from the edge of the curb where those using accessible parking are required to parallel park. This makes it impossible for those using the parking spaces to deploy ramps or lifts.
  • One ramp was ridiculously steep, clearly outside Access Board requirements.
  • Many ramps were in poor repair, with potholes at the edges.
  • One ramp was completely inaccessible, as construction materials covered it. There was no opportunity to detour, as construction cones were dumped in the possible detour pathway.

Think that’s a lot of problems? We walked less than two blocks! Perhaps some of our frustration can now be understood…